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Hi Dee 74,

I Know were your at I'm new to all this myself and the Dr's are absolutly doing my head in, the one Dr saw me for 5 mins, didnt even examine me and offered me prozac and wanted to send me to see a psyciatrist.... and well I wont repeat exactly what I said to him...

I have seen four different Dr's since I have been having problems in the last 9 months and all of them just have been a waste of time. I have had to do all my own research and push the gp into doing something.

I too had a negative ANA test last December, which I had to push to get them to do in the first place. Because it was negative they did not push it any further... but having read upon it I know now that this is a cheap and pretty usless test. 25% of the population of the world will have a positive ANA test but it does not mean they have LUPUS. The ANA test is only posiitve in 90% of people with LUPUS, so that still leaves 10% of people with the disease geting a negative one... then it gets better... people with LUPUS can have a negative ANA at one time then a positive the next and so on and so on because the levels of ANA can vary in the blood from one time until the next.

There is no specific blood test that can completly diagnose LUPUS, however there are several differnent blood tests that when the results are put togeather with the symptoms of the disease will allow pysicians to diagnose LUPUS. I found out recently by demanding copies of my blood tests for the past 2 years that I have been having abnormal tests the last 2 years and my gp as been saying that they are ok.

The first thing I noticed is that my LYMPOCHTE count is continually low, this is typical in people with LUPUS and Immune deficeny syndrome, becasue the body's immune system is producing antibodies to the red blood cells. Also my white blood and red blood count is within normal limits but only just again people with LUPUS tend to have low red and white full blood counts. I also noticed that my old GP who as now retired did rheumatoid factar, c reactive protein and ESR blood tests on me 2 years ago and I did not know. My rheumatoid factor was positive again 35% of people with LUPUS get a positive RF test as do people with arthritus and sjogrens and other illness. MY ESR was also high again this is raised in people with LUPUS, anemia, inflamatory disesaes, pregnancy and GI disease.

As a result of me finding this out and that my ankle as again swollen up for no reason, I have had this problem for a good 10 years and my gp could not give me any previous explanation for this, I have also had heart palpatations for 9 years which just come and in spasms, all my tests on my heart came back normal 9 years ago. For the last 9 months I have been having dizzy spells headaches, tingling in my hands, arms and face and muscle twitching in my calves and arms and legs, tiredness, forgetfulness, gasey stomach and aches in my elbows and what feels like pulled muscles that seem to move around my body from my chest into my arms then my legs, there one minute and gone the next and the only explanation my gp could give was stress and anxiety???? Guess what according to the NHS on line website here in England LUPUS causes stress and Anxiety.

The fingers on my left hand went a grey sort of colour the other day I thought it was printer ink at first but I could not wash it off, so I went to see my GP who siad I don't know what that is I said I do this is LUPUS!! add it the other symptoms and my previous blood test's and what have you got???

At last I got a referall to see a rheumatologist, I saw him yesterday guess what my fingers had gone back to normal, but he could see my ankle and as agreed to run the more specific and expensive blood tests, which are, complement studies C3 and C4 whica are decreeased if there as been an immune reaction, Anti DNA, up to 80% of lupus suffers get a positive test on this one. ENA tests will show ANTI-ro is more specific for lupus skin disease but if you get an ANTI-RNP combined with an ANTI DNA is almost total proof of the presence of LUPUS in the body, but guess what a negative test does not mean that you don't have it. ANTI-SM if posiitvie is only found in SLE but again a negative test does not mean that you don't have it. MOST PEOPLE WITH LUPUS WILL GET EITHER AN ANTI-SM OR AN ANTI-DNA. Another test the ANTI-Cardiolipin is also positive in 33% of LUPUS patients.

I must advise you that I am not in any way a Dr and this is only what I have read myself during my challenge to find out what on earth is going on with my body.

My advice to you is dont be afraid to challenge your dr if you think his facts are wrong go and see him and take with you any information that you have been able to get your hands make sure that they are from a good source though re from a LUPUS website for example and if he/she come out with you information that you think is wrong for examlpe you cant have LUPUS if you have a negative ANA test push your literature in his or her nose and say oh yes you can according to this. That's what I did, it scares them to death when you show you have more knowledge than they do. Read, read and read get up to date with as much information on the disease as you can then challange what they are saying.. And dont be afraid to change dr's as many times as you want to in order to get a diagnosis that make sense.

Good luck and let me know how you get on, I hope my information helps but like I said I am not a Dr i'm just a sufferer like yourself.


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